Busy busy!

IMG_3228[3] copy

The Lupus Europe Board of Trustees (from left to right – Jeanette Andersen, Sara Badreh, Kirsi Myllys, Katharine Wheeler, Alain Cornet (secretariat), Anne Charlet, and Kirsten Lerstrøm

The blog has been quiet recently, and with good reason! We have all been so busy attending events, participating in work groups and meeting face-to-face, that we haven’t been able to keep up on the blog – despite our super-human lupus powers!

Hopefully you’ll know everything that has been going on from reading the newsletter. If you haven’t already signed up to get it in your inbox, follow this link.

Here’s a brief glimpse – not a complete list – of a few things we have been doing:  

  • Sara has attended several meetings, mainly on research subjects. Among others, she travelled to Lisbon in March for the PARE congress, Washington for the Lupus think tank in April, and in May, the Lupus Academy, in Lisbon, Portugal and the 8th EULAR Scientifically Endorsed Course on Systemic Lupus Erythematosus, in Pisa, Italy.
  • The whole board met in March for multi-stakeholder meetings on research (more information below) and clinical trials – and in June to progress on LUPUS EUROPE’s 2018-2023 Strategic Plan.
  • Jeanette, Sara and Anne are attending EULAR this week (meet them at the LUPUS EUROPE / FELUPUS Stand in the EULAR village – V9)
  • Anne and Alain are linking with our partners and sponsors to close the current year’s funding. Anne has also been interviewed for press releases and in videos for World Lupus Day.
  • Katharine attended EPF’s AGM and continues her work with the EPF Access work group, as well as working on creating closer ties with members (Lupus catch-up chats etc.) and working on various aspects of communication (including the blog).
  • In addition to Youth activities with Young PARE and working on preparing the LUPUS EUROPE Youth Patient Panel, Jeanette has also been working on one aspect of the Kick Lupus project – you will hear more during the convention.
  • Annemarie Sluijmers, from the Dutch group, NVLE, has also been co-opted to integrate an EPF group, working on Patient Safety.
  • Ines from the Portuguese group was instrumental in creating the social media campaign during the month of May. Special thanks must also go to Lupus UK whose material inspired the campaign. In addition to the combined World Lupus Federation campaign, we were all delighted with the social media campaign and the number of people who translated and shared.
  • Our friend Nick Hicks, has been helping us to work on the building of a “Voices of lupus” campaign, building on the testimonials collected in Würzburg.

201502_eupatiWe are also delighted to announce that Jeanette, LUPUS EUROPE’s secretary has been accepted for the EUPATI PATIENT EXPERT COURSE which will begin on the 4th of September 2017 and will run for 15 months.

The EUPATI Training Course – Patient Experts in Medicines Research & Development is an exciting and unique opportunity offering patient advocates expert-level training in medicines research and development, specifically tailored for them.

Upon completion of the course, you should have the knowledge to allow you to make a meaningful contribution to the medicines research and development process, with the aim of providing better medicines to patients. You will also be able to generate a broader dialogue around future patient involvement in the medicines research and development process across Europe.

There is a great need for patient experts in lupus! We need better treatment of our disease and this starts with research. Here patient experts play an important role, because they know how it feels to live with the disease and follow the treatment. Patients and researchers might not always have the same priorities when it comes to developing new treatments for the disease. Often the patient will focus on the side-effects of the treatment and a better Quality of Life, where the researcher is dedicated to minimizing disease activity at (almost) any cost.

10

 

World Lupus Day – In addition to the other World Lupus Day activities, you may also have seen the videos, starring Anne, LUPUS EUROPE Vice-Chair, and her wonderful daughter Amélie, speaking up for young people with lupus.

A personal World Lupus Day experience – Hate the disease, love the people!

“This year for World Lupus Day, to continue efforts of awakening public awareness of lupus, Neovacs*, the French Biotech company, decided to create testimonial videos, and publish press releases.  They asked me if I would be willing to talk on video about lupus – they would provide the questions and the cameraman. That’s not an offer one refuses!

So, days before May 10th, the journalist and the cameraman came to my apartment and set up.  “This will only take 15 mins”… two hours later they left with four videos in their bags.  Even if one is used to speaking in public, being filmed is very different and causes more stage fright than I expected.

But they asked the right questions, and let me start and start again, over and over.  And while I was filming, my daughter Amélie watched on to make sure that I didn’t say anything too far off topic or too far from the truth.  And as she watched, I happened to mention that it was Amélie who was the patient and the reason I was at all involved in Lupus Europe.  Their eyes lit up and they turned to her.  She smiled timidly, understanding what they were interested in, and said, ok, if they wanted, she would also say something on video.

In my videos, I answered their questions as best I could with a lens pointed straight at me, trying hard to remember all key points that I had prepared in a phone discussion with Bernadette (chair of French speaking Lupus Belgium).

But once I watched the videos, it struck me how, no matter how schooled what I had to say was, it was the honestly and simplicity of that young woman, my daughter, speaking from her heart, that felt true and meaningful, and was the real message.  She lives with lupus in her, waiting to pounce when she least expects it, but she lives well, so strong, and that’s what we see on the video.

And in the end, that is the true World Lupus Day message: live your life as best you can, sometimes maybe even forgetting you have lupus, but live like no-one else knows”.

Anne (mailto:Anne@lupus-europe.org)

You can access the videos on LUPUS EUROPE’s Youtube channel 

milan-title-lense

LUPUS EUROPE’S NEXT CONVENTION – MILAN, ITALY, NOVEMBER 15 to 19, 2017.

This year´s theme will be pain, fatigue and stress and the programme will combine valuable speakers, interactive workshops and sharing sessions. This will also be the occasion to collect your final input on our 2018-2023 Strategic plan, making sure all our energy is focused on what most matters to achieve our vision of “A fulfilling life for all people living with lupus, until we have reached a world without lupus”.

3 trustee positions are up for election at our Milan 2017 Council meeting. If you, or anyone in your national team, would be interested in joining LUPUS EUROPE’s Board of trustees, don’t hesitate, apply through your national group!

See more about being a LE trustee on our blog: https://lupus-europe-blog.org/2015/05/17/about-being-a-trustee-katharines-story/ or contact one of our current trustees.

Applications should be sent to the Lupus Europe Secretary at secretary@lupus-europe.org (mailto:secretary@lupus-europe.org; secretariat@lupus-europe.org by July 15, 2017.

research-icon

LUPUS EUROPE is currently preparing for its next strategic plan from 2018-2023. As a result, we have had extra meetings, including a face-to-face meeting over two days with multiple stake-holders on the subject of research and clinical trials.

WHAT SHOULD LUPUS EUROPE DO ABOUT RESEARCH ?

As part of its work to define its 2018-2023 strategic objectives, LUPUS EUROPE decided to gather input from multiple stakeholders on where it should focus its efforts in the particular area of Research. To achieve this, LUPUS EUROPE held 3 different panel sessions, and gathered input from members through a survey.

The webinar with our medical panel concluded that we should make patients increasingly aware of the valuable and critical role they ALL have to play in Research. LUPUS EUROPE could leverage its European dimensions and use the new ERN to foster collaboration. It could step up Advocacy to make healthcare more accessible. Finally, LUPUS EUROPE could help understand the total burden/cost of the disease, not just medication, but also all direct and indirect impacts.

The industry panel concluded that LUPUS EUROPE could make a meaningful difference by ensuring higher awareness and education on lupus and clinical trials and establishing a panel of “experts” that can connect the patient community to the scientific community and provide advice and support from the very initial stages of research all the way to effective access through treatment plans.

The discussions with other Patient organisations highlighted the critical need to connect with existing structures to avoid non-productive duplication of efforts and amplify our work, and the complexity of setting priorities that will satisfy at the same time the short term aspirations of our members and the investment needed in building capabilities of patients to support research.

Finally, the members survey showed that 87% of them feel engaged in lupus research. 47% promote and encourage participation of their members and 40% raise funds. 47% actively participate and support research by providing expertise, and 20% run some research on their own. With regards to Research, they would set LUPUS EUROPE priorities on (a) Running qualitative research(patients focus groups) and quantitative research to better understand living with lupus; and (b) disseminating results of research in laymen language. Next to Research, they would like LUPUS EUROPE to put more priorities on members (creating synergies, …) and to increase awareness / speaking for patients in general or specific events.

This input will be essential for the board to build its 2018-2023 Strategic plan. For more information, please contact the secretariat (mailto:secretariat@lupus-europe.org)

 

Open letter – Make health a priority – Please support!

As discussed during its Annual General Meeting last month, the European Patients’ Forum is deeply concerned with the very uncertain future of European health collaboration and of the Health Programme post-2020. The five scenarios proposed by the European Commission Mr. Junker in April show that health is not a priority for the European Union.

To voice concerns and initiate what is hoped will be a fruitful dialogue on the future of health at EU level, 39 health organisations, including EPF and several of its European members, sent an open letter to Mr. Juncker on 6th June.

The objective of the letter is to reiterate the view that health is absolutely and unequivocally a central topic for the EU, and to open a dialogue.

Please support and share the open letter found which you will find below. You can also find it here as well as tweets to share at this link.

Dear President Juncker, EU Health Collaboration is crucial for Europe’s future

Brussels, 6 June 2017.

To: Jean-Claude Juncker, President, European Commission

cc: Frans Timmermans, First Vice-President, European Commission

Vytenis Andruikaitis, Commissioner, DG Health & Food Safety

Günther Oettinger, Commissioner, DG Budget & Human Resources

Carlos Moedas, Commissioner, Research, Science & Innovation

EU Health Collaboration is crucial for Europe’s future

Dear President Juncker,

We, the undersigned organisations, representing EU health stakeholders, wish to express our grave concern about the future of health in European policies and programmes, in the light of your White Paper on the Future of Europe, and propose an urgent meeting with you and your services on this topic.

Our determined view, shared by the vast majority of EU citizens, is that health is absolutely and unequivocally a core business of the EU. Protection of a high level of human health and wellbeing is entrenched in the Treaties of the European Union[1]. EU collaboration in the field of health is indispensable for the future of Europe and rebuilding the trust of citizens in the European Union. We need more health to unlock the full potential of economic and social policies.

70% of Europeans want the EU to do more for health, according to the most recent Eurobarometer survey. With such a strong, unequivocal demand from EU citizens for more action in the field of health, it is essential that this is not only maintained, but actually enhanced. The EU needs to continue deliver results that make a tangible difference in the daily lives of its citizens and thus re-establish people’s trust in its institutions.

Health protection and improvement is a great success story of the European Union

Life expectancy is rising across the EU. Accession to the Union is positively correlated with health gains and longer lives. Without EU level action and support of the Health Programme, EU citizens would be more at risk from health threats. Whilst there is a need for continuous improvement, protection standards for patients, consumers and workers are amongst the highest in the world, thanks to EU legislation. Indeed, European integration and collaboration has brought great benefits for our health and provides vital resources for our health services: free movement of health professionals, health technologies and patients. We are assured of our right to treatment in other member states, under common minimum safety and quality standards. We are also reassured that, thanks to cross-border collaboration, highly specialised expertise will be shared across borders, as the EU has just embarked in one of its most promising transnational initiatives, the European Reference Networks for Highly Complex and Rare Diseases – an area not only where EU-wide strategies are effective, but also where the added value of EU action is striking.

This is thanks to EU legislation, rights and protections which complement national laws.

It is impossible to imagine a functioning internal market which does not consider and protect the health of its citizens, patients and consumers. Economic growth can only be built by healthy and resilient populations.

EU coordinated health action saves lives and reduces the burden of disease

By facilitating closer cooperation, the EU has saved countless citizens’ lives and contributed to their improvement. The Health Programme is a vital enabler for health policy formulation and for effective implementation and it has, over several years, triggered shared good practices on complex health topics for which EU cooperation is essential (such as patient safety and quality of care), encouraging upward convergence.

The conclusions of the previous Health Programme evaluation were extremely positive, with evidence of its impact beyond its relatively modest (financial) size, and exchange of knowledge and experience between member states which would not otherwise have taken place. Moreover, it “made it possible to develop many activities… where the economic situation and budget restrictions would not have allowed them to be made a priority” – now more critical than ever, when national health budgets are under even more pressure. The Programme was seen as providing value for money, and particularly important for ensuring a human rights-based approach to health policy.

We are therefore profoundly concerned that some of the scenarios in your White Paper on the Future of Europe would even consider reducing European action, cooperation and legislation and to step back from the protection and improvement of our health in Europe.

Instead, this role must be enhanced in the future through a new robust and ambitious Health Programme, convening member states to cooperate on health, underpinning vital collaboration with other institutions such as WHO and OECD and supporting health research.

Unprecedented health and social challenges can only be tackled at a European level

There has never been a stronger case, or a more vital moment for Europe to work together to protect our health.

Whilst life-expectancy has improved, the years gained are often lived in relatively poorer health due to the proliferation of preventable chronic diseases, compounded by huge disparities that persist within and between member states. Average life expectancy is 12 years shorter for a man in Lithuania than in Italy. Discrimination and inequality remains widespread when it comes to access to healthy living conditions and healthcare. For example, the lives of Roma people and refugees are expected to be 10 years shorter than national averages and homeless women in Europe die on average at just 43 years of age because of the multiple health disadvantages they face. The Lisbon Strategy included a target of adding two healthy life years across the EU by 2020, a target that still needs to be met.

Europe is facing important health threats which must become a top priority for this Commission. Our precious, life-saving antibiotics are declining in effectiveness. Antimicrobial resistance is taking hold more rapidly around the world than expected. No single country can tackle that challenge alone. Bacteria and drug resistance cannot be stopped by borders. The alternative if we fail to act is unimaginable: 10 million deaths globally every year by 2050[2]. Rich countries will not be immune. Those of us from countries which take high quality healthcare systems for granted arguably have the most to lose.

National governments were expecting, and calling for, European Commission support in the form of a chronic disease strategy. The majority of Member States want more EU action for health, especially disease prevention and support to increase the safety, quality and efficiency of care, to aid their own efforts to make their health systems more sustainable.

Common challenges to Europe’s health systems require common action

National governments remain responsible for their health systems, but European health systems face common challenges – a necessary shift from disease-focused, hospital-centred care to person-centred, long-term chronic disease management where patients, families and communities play a key role.

Member States thus need cross-border support, in the form of expertise, coordination, exchange of data, evidence and best practices, and programme financing.

National governments cannot address the threats to health and health services alone. We face common challenges from drug-resistant infections, spikes in chronic diseases, obesity, alcohol-related harm, infectious diseases, emerging technologies, rising prices of medicines, and inequities in access to healthcare, that can be tackled together far more effectively.

Looking ahead: Commit to Health and Sustainable Development

Looking ahead, the EU must not shy away from stronger engagement in the field of health. On the contrary, the challenges we are facing and the opportunity to continue demonstrating to European citizens the added value of the EU action on health, compels health to become a EU flagship policy that promotes stronger protection for patients and consumers and ultimately improves people’s lives.

If the EU steps back from protecting patients and consumers and improving our health it would irreparably damage the institutions’ credibility and trustworthiness.

Therefore, a strong future Health Programme is crucial, not least to ensure that voices from civil society – patients, consumers, health professionals, epidemiologists and technical experts – are represented in policy dialogues which build on all available evidence and expertise.

For this we need strong high-level leadership inside the Commission, with specific responsibility for health. Mainstreaming health in other Commission Directorates will not work without stimulus, guidance, knowledge, expertise, and leadership from a strong Directorate for Health.

This is evidenced by recent developments on the Digital Health Agenda, and the symbiotic relationship between DG SANTÉ and DG CONNECT. Other EU policies will be jeopardised without an appropriate health policy lens. Efforts around the Social Pillar and the European Solidarity Corps are not replacements for health leadership within the Commission but rather, should be highly complementary measures to ensure maximum impact on the ground.

The EU has committed to deliver the UN Sustainable Development Goals both within the EU and globally, with a key goal on health.

Health is also high on the international policy agenda – the G20 under Germany’s leadership is discussing antibiotic resistance. This is because health and access to good quality healthcare and social care are primary concerns for everyone. Yet international institutions lack the mechanisms for real implementation that make a difference to people’s daily lives.

This makes the EU’s role – and the necessity to do more, not less – absolutely key. This also requires health leadership and expertise within the Commission working in concert with the health community.

In conclusion:

We call for an enhanced EU action in the field of health that brings the EU closer to its citizens, by protecting patients and consumers and improving people’s health. We call for a EU action on health that fosters cross-country collaboration, integrates the action of Member States and helps them to address the unprecedented challenges we are facing. We call for EU action on health supported by a robust EU Health Programme and the leadership of a dedicated Directorate in the European Commission.

We request a meeting with you at your earliest convenience to explore these issues in more detail and agree a viable way forward.

Yours sincerely,

Archie Turnbull, President, European Public Health Alliance

Marco Greco, President, European Patients’ Forum

SIGNING ORGANISATIONS (in alphabetical order)

Alzheimer Europe ⧫ Association Internationale de la Mutualité ⧫ European Alcohol Policy Alliance (Eurocare) ⧫ European Alliance of Neuromuscular Disorders Associations (EAMDA) ⧫ European Association of Hospital Pharmacists (EAHP) ⧫ European Association for the Study of the Liver (EASL) ⧫ European Cancer Leagues (ECL) ⧫ European CanCer Organisation (ECCO) ⧫ European Cancer Patient Coalition (ECPC) ⧫ European COPD Coalition (ECC) ⧫ European Disability Forum (EDF) ⧫ European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) ⧫ European Federation of Families of People with Mental Illness (EUFAMI) ⧫ European Federation of National Organisations Working with the Homeless (FEANTSA) ⧫ European Federation of Salaried Doctors (FEMS) ⧫ European Health Management Association (EHMA) ⧫ European Haemophilia Consortium (EHC) ⧫ European Institute for Women’s Health (EIWH) ⧫ European Liver Patients’ Association (ELPA) ⧫ European Multiple Sclerosis Platform (EMSP) ⧫ European Network of Fibromyalgia Associations (ENFA) ⧫ European Network for Smoking and Tobacco Prevention (ENSP) ⧫ European Parkinson’s Disease Association (EPDA) ⧫ European Partnership for Improving Health, Equity & Wellbeing (Eurohealthnet) ⧫ European Patients Forum (EPF) ⧫ European Public Health Alliance (EPHA) ⧫ European Umbrella Organisation for Psoriasis Movements (EUROPSO) ⧫ Fertility Europe ⧫ France Assos Santé ⧫ Global Alliance of Mental Illness Advocacy Networks-Europe (GAMIAN Europe) ⧫ Health Action International (HAI) ⧫ International Federation for Spina Bifida and Hydrocephalus (IF) ⧫ Lung Cancer Europe ⧫ (LuCE) ⧫ Mental Health Europe (MHE) ⧫ Platform for International Cooperation on Undocumented Migrants (PICUM) ⧫ Rare Diseases Europe (Eurordis) ⧫ Retina International ⧫ Royal College of Physicians (RCP London) ⧫ Smoke Free Partnership (SFP)